Much thanks to the awesome folk at the Lupus Foundation of America for the invitation to be a part of the Annual Lupus Summit on June 15th & 16th. I was able to meet with State Representatives and Senators to truly advocate for things that matter to Lupus.
Some point of reference, check out the chart below... Look at the dates for medications that have been approved for Lupus... 1958 and then nothing until 2011. And nothing since then. For 1.5 million Americans (and many many more that are still searching for an official diagnosis), this isn't enough. We need more funding for Lupus and more awareness. Also, the FDA needs to reform its policies on clinical trials. Since Lupus can attack any part of the body, it's hard to expect researchers to find 5,000-6,000 people with the same exact symptoms and specific demographic and medical background which they expect to be done to test new treatments. With these rigid restrictions that were created and haven't changed since decades ago, these requirements are dated and unrealistic for such a complex and unique disease as Lupus.
Glad to have learned soooo much. Also, it was soooo dope getting a shoutout from the Director of the National Institute of Health, Dr. Francis Collins at the oh so lovely Lupus Advocacy Gala. I'm looking forward to advocating next year!